question

February 2, 2006

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 2, 2006

,

Thanks for responding to my question. I'm not taking Cytoxan as of yet. I'm on Imuran 150mg every day, and it was keeping the sarc monster under control till lately. The Hct, and the Hgb are the two that for me are too low. This test is to determine if you are loosing blood, somewhere, or if your anemic. I have pernicious anemia, but and actually, I went to give blood one day I was off back work back in 2001, and they turned me down because my Hgb was too low. I thought it had to be something wrong with their equipment, but sure enough, and this is when my sarc made sure I knew I was really sick. I feel that way now, I hate the thoughts of a blood transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin hopefully monday if they come back sarcoid which I'm almost positive they will, they are to start me on Remicade or so that's what I was told. Some of the group has had really good luck with it, and makes them feel better, hey I'm for that. lol

Thanks,

t

-- Re: Question

TheresaI'm on Cytoxan & I'm not sure what blood levels youmean. I'm not a nurse but I do have my little slip ofpaper that somehow came home with me with a bunch ofnumbers on it. If you can give me the initials I cantell you what my count is but they haven't ever saidanything about a transfusion to me.Oh yea, can't remember who asked about the Cytoxanbut they've had me on 1400 dose for a while now.grannylunatic@...__________________________________________________

February 2, 2006

,

Thanks for responding to my question. I'm not taking Cytoxan as of yet. I'm on Imuran 150mg every day, and it was keeping the sarc monster under control till lately. The Hct, and the Hgb are the two that for me are too low. This test is to determine if you are loosing blood, somewhere, or if your anemic. I have pernicious anemia, but and actually, I went to give blood one day I was off back work back in 2001, and they turned me down because my Hgb was too low. I thought it had to be something wrong with their equipment, but sure enough, and this is when my sarc made sure I knew I was really sick. I feel that way now, I hate the thoughts of a blood transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin hopefully monday if they come back sarcoid which I'm almost positive they will, they are to start me on Remicade or so that's what I was told. Some of the group has had really good luck with it, and makes them feel better, hey I'm for that. lol

Thanks,

t

-- Re: Question

TheresaI'm on Cytoxan & I'm not sure what blood levels youmean. I'm not a nurse but I do have my little slip ofpaper that somehow came home with me with a bunch ofnumbers on it. If you can give me the initials I cantell you what my count is but they haven't ever saidanything about a transfusion to me.Oh yea, can't remember who asked about the Cytoxanbut they've had me on 1400 dose for a while now.grannylunatic@...__________________________________________________

February 2, 2006

,

Thanks for responding to my question. I'm not taking Cytoxan as of yet. I'm on Imuran 150mg every day, and it was keeping the sarc monster under control till lately. The Hct, and the Hgb are the two that for me are too low. This test is to determine if you are loosing blood, somewhere, or if your anemic. I have pernicious anemia, but and actually, I went to give blood one day I was off back work back in 2001, and they turned me down because my Hgb was too low. I thought it had to be something wrong with their equipment, but sure enough, and this is when my sarc made sure I knew I was really sick. I feel that way now, I hate the thoughts of a blood transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin hopefully monday if they come back sarcoid which I'm almost positive they will, they are to start me on Remicade or so that's what I was told. Some of the group has had really good luck with it, and makes them feel better, hey I'm for that. lol

Thanks,

t

-- Re: Question

TheresaI'm on Cytoxan & I'm not sure what blood levels youmean. I'm not a nurse but I do have my little slip ofpaper that somehow came home with me with a bunch ofnumbers on it. If you can give me the initials I cantell you what my count is but they haven't ever saidanything about a transfusion to me.Oh yea, can't remember who asked about the Cytoxanbut they've had me on 1400 dose for a while now.grannylunatic@...__________________________________________________

February 3, 2006

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

>

> ,

> Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

> m on Imuran 150mg every day, and it was keeping the sarc monster under

> control till lately. The Hct, and the Hgb are the two that for me are

too

> low. This test is to determine if you are loosing blood, somewhere, or

if

> your anemic. I have pernicious anemia, but and actually, I went to

give

> blood one day I was off back work back in 2001, and they turned me

down

> because my Hgb was too low. I thought it had to be something wrong

with

> their equipment, but sure enough, and this is when my sarc made sure I

knew

> I was really sick. I feel that way now, I hate the thoughts of a blood

> transfusion but it looks like that is where I'm heading.

>

> They are suppose to do some biopsies of granulomas under my skin

hopefully

> monday if they come back sarcoid which I'm almost positive they will,

they

> are to start me on Remicade or so that's what I was told. Some of the

group

> has had really good luck with it, and makes them feel better, hey I'm

for

> that. lol

>

> Thanks,

> t

>

> -- Re: Question

>

> Theresa

> I'm on Cytoxan & I'm not sure what blood levels you

> mean. I'm not a nurse but I do have my little slip of

> paper that somehow came home with me with a bunch of

> numbers on it. If you can give me the initials I can

> tell you what my count is but they haven't ever said

> anything about a transfusion to me.

> Oh yea, can't remember who asked about the Cytoxan

> but they've had me on 1400 dose for a while now.

>

> grannylunatic@...

>

> __________________________________________________

>

February 3, 2006

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

>

> ,

> Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

> m on Imuran 150mg every day, and it was keeping the sarc monster under

> control till lately. The Hct, and the Hgb are the two that for me are

too

> low. This test is to determine if you are loosing blood, somewhere, or

if

> your anemic. I have pernicious anemia, but and actually, I went to

give

> blood one day I was off back work back in 2001, and they turned me

down

> because my Hgb was too low. I thought it had to be something wrong

with

> their equipment, but sure enough, and this is when my sarc made sure I

knew

> I was really sick. I feel that way now, I hate the thoughts of a blood

> transfusion but it looks like that is where I'm heading.

>

> They are suppose to do some biopsies of granulomas under my skin

hopefully

> monday if they come back sarcoid which I'm almost positive they will,

they

> are to start me on Remicade or so that's what I was told. Some of the

group

> has had really good luck with it, and makes them feel better, hey I'm

for

> that. lol

>

> Thanks,

> t

>

> -- Re: Question

>

> Theresa

> I'm on Cytoxan & I'm not sure what blood levels you

> mean. I'm not a nurse but I do have my little slip of

> paper that somehow came home with me with a bunch of

> numbers on it. If you can give me the initials I can

> tell you what my count is but they haven't ever said

> anything about a transfusion to me.

> Oh yea, can't remember who asked about the Cytoxan

> but they've had me on 1400 dose for a while now.

>

> grannylunatic@...

>

> __________________________________________________

>

February 3, 2006

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

>

> ,

> Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

> m on Imuran 150mg every day, and it was keeping the sarc monster under

> control till lately. The Hct, and the Hgb are the two that for me are

too

> low. This test is to determine if you are loosing blood, somewhere, or

if

> your anemic. I have pernicious anemia, but and actually, I went to

give

> blood one day I was off back work back in 2001, and they turned me

down

> because my Hgb was too low. I thought it had to be something wrong

with

> their equipment, but sure enough, and this is when my sarc made sure I

knew

> I was really sick. I feel that way now, I hate the thoughts of a blood

> transfusion but it looks like that is where I'm heading.

>

> They are suppose to do some biopsies of granulomas under my skin

hopefully

> monday if they come back sarcoid which I'm almost positive they will,

they

> are to start me on Remicade or so that's what I was told. Some of the

group

> has had really good luck with it, and makes them feel better, hey I'm

for

> that. lol

>

> Thanks,

> t

>

> -- Re: Question

>

> Theresa

> I'm on Cytoxan & I'm not sure what blood levels you

> mean. I'm not a nurse but I do have my little slip of

> paper that somehow came home with me with a bunch of

> numbers on it. If you can give me the initials I can

> tell you what my count is but they haven't ever said

> anything about a transfusion to me.

> Oh yea, can't remember who asked about the Cytoxan

> but they've had me on 1400 dose for a while now.

>

> grannylunatic@...

>

> __________________________________________________

>

February 4, 2006

Hi Terri,

I have a bunch, some are small under the skin, and tender to touch, and

others are on top of the skin, they start like a blister, peel, then

feel like fire, then they like crust up. Sometimes they are real

itchy, and they keep building up and peeling of. the ones on my face

are two kinds, some are red, and tender, and some are just slightly

above the skin, but flesh color, I have allot around around my eyes, I

just cover them with make up.

hugs and blessings,

Marla

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster under

control till lately. The Hct, and the Hgb are the two that for me are

too

low. This test is to determine if you are loosing blood, somewhere, or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure I

knew

I was really sick. I feel that way now, I hate the thoughts of a blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they will,

they

are to start me on Remicade or so that's what I was told. Some of the

group

has had really good luck with it, and makes them feel better, hey I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 4, 2006

Hi Terri,

I have a bunch, some are small under the skin, and tender to touch, and

others are on top of the skin, they start like a blister, peel, then

feel like fire, then they like crust up. Sometimes they are real

itchy, and they keep building up and peeling of. the ones on my face

are two kinds, some are red, and tender, and some are just slightly

above the skin, but flesh color, I have allot around around my eyes, I

just cover them with make up.

hugs and blessings,

Marla

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster under

control till lately. The Hct, and the Hgb are the two that for me are

too

low. This test is to determine if you are loosing blood, somewhere, or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure I

knew

I was really sick. I feel that way now, I hate the thoughts of a blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they will,

they

are to start me on Remicade or so that's what I was told. Some of the

group

has had really good luck with it, and makes them feel better, hey I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 4, 2006

Hi Terri,

I have a bunch, some are small under the skin, and tender to touch, and

others are on top of the skin, they start like a blister, peel, then

feel like fire, then they like crust up. Sometimes they are real

itchy, and they keep building up and peeling of. the ones on my face

are two kinds, some are red, and tender, and some are just slightly

above the skin, but flesh color, I have allot around around my eyes, I

just cover them with make up.

hugs and blessings,

Marla

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster under

control till lately. The Hct, and the Hgb are the two that for me are

too

low. This test is to determine if you are loosing blood, somewhere, or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure I

knew

I was really sick. I feel that way now, I hate the thoughts of a blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they will,

they

are to start me on Remicade or so that's what I was told. Some of the

group

has had really good luck with it, and makes them feel better, hey I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 4, 2006

Marla,

Thanks for the info; I may bring them up to the pulmonologist tomorrow.

Terri G.

> >

> >>,

> >>Thanks for responding to my question. I'm not taking Cytoxan as of

> >>

> >yet. I

> >

> >>m on Imuran 150mg every day, and it was keeping the sarc monster

under

> >>control till lately. The Hct, and the Hgb are the two that for me

are

> >>

> >too

> >

> >>low. This test is to determine if you are loosing blood, somewhere,

or

> >>

> >if

> >

> >>your anemic. I have pernicious anemia, but and actually, I went to

> >>

> >give

> >

> >>blood one day I was off back work back in 2001, and they turned me

> >>

> >down

> >

> >>because my Hgb was too low. I thought it had to be something wrong

> >>

> >with

> >

> >>their equipment, but sure enough, and this is when my sarc made sure

I

> >>

> >knew

> >

> >>I was really sick. I feel that way now, I hate the thoughts of a

blood

> >>transfusion but it looks like that is where I'm heading.

> >>

> >>They are suppose to do some biopsies of granulomas under my skin

> >>

> >hopefully

> >

> >>monday if they come back sarcoid which I'm almost positive they

will,

> >>

> >they

> >

> >>are to start me on Remicade or so that's what I was told. Some of

the

> >>

> >group

> >

> >>has had really good luck with it, and makes them feel better, hey

I'm

> >>

> >for

> >

> >>that. lol

> >>

> >>Thanks,

> >>t

> >>

> >>-- Re: Question

> >>

> >>Theresa

> >>I'm on Cytoxan & I'm not sure what blood levels you

> >>mean. I'm not a nurse but I do have my little slip of

> >>paper that somehow came home with me with a bunch of

> >>numbers on it. If you can give me the initials I can

> >>tell you what my count is but they haven't ever said

> >>anything about a transfusion to me.

> >>Oh yea, can't remember who asked about the Cytoxan

> >>but they've had me on 1400 dose for a while now.

> >>

> >>grannylunatic@

> >>

> >>__________________________________________________

> >>

February 4, 2006

Marla,

Thanks for the info; I may bring them up to the pulmonologist tomorrow.

Terri G.

> >

> >>,

> >>Thanks for responding to my question. I'm not taking Cytoxan as of

> >>

> >yet. I

> >

> >>m on Imuran 150mg every day, and it was keeping the sarc monster

under

> >>control till lately. The Hct, and the Hgb are the two that for me

are

> >>

> >too

> >

> >>low. This test is to determine if you are loosing blood, somewhere,

or

> >>

> >if

> >

> >>your anemic. I have pernicious anemia, but and actually, I went to

> >>

> >give

> >

> >>blood one day I was off back work back in 2001, and they turned me

> >>

> >down

> >

> >>because my Hgb was too low. I thought it had to be something wrong

> >>

> >with

> >

> >>their equipment, but sure enough, and this is when my sarc made sure

I

> >>

> >knew

> >

> >>I was really sick. I feel that way now, I hate the thoughts of a

blood

> >>transfusion but it looks like that is where I'm heading.

> >>

> >>They are suppose to do some biopsies of granulomas under my skin

> >>

> >hopefully

> >

> >>monday if they come back sarcoid which I'm almost positive they

will,

> >>

> >they

> >

> >>are to start me on Remicade or so that's what I was told. Some of

the

> >>

> >group

> >

> >>has had really good luck with it, and makes them feel better, hey

I'm

> >>

> >for

> >

> >>that. lol

> >>

> >>Thanks,

> >>t

> >>

> >>-- Re: Question

> >>

> >>Theresa

> >>I'm on Cytoxan & I'm not sure what blood levels you

> >>mean. I'm not a nurse but I do have my little slip of

> >>paper that somehow came home with me with a bunch of

> >>numbers on it. If you can give me the initials I can

> >>tell you what my count is but they haven't ever said

> >>anything about a transfusion to me.

> >>Oh yea, can't remember who asked about the Cytoxan

> >>but they've had me on 1400 dose for a while now.

> >>

> >>grannylunatic@

> >>

> >>__________________________________________________

> >>

February 4, 2006

Marla,

Thanks for the info; I may bring them up to the pulmonologist tomorrow.

Terri G.

> >

> >>,

> >>Thanks for responding to my question. I'm not taking Cytoxan as of

> >>

> >yet. I

> >

> >>m on Imuran 150mg every day, and it was keeping the sarc monster

under

> >>control till lately. The Hct, and the Hgb are the two that for me

are

> >>

> >too

> >

> >>low. This test is to determine if you are loosing blood, somewhere,

or

> >>

> >if

> >

> >>your anemic. I have pernicious anemia, but and actually, I went to

> >>

> >give

> >

> >>blood one day I was off back work back in 2001, and they turned me

> >>

> >down

> >

> >>because my Hgb was too low. I thought it had to be something wrong

> >>

> >with

> >

> >>their equipment, but sure enough, and this is when my sarc made sure

I

> >>

> >knew

> >

> >>I was really sick. I feel that way now, I hate the thoughts of a

blood

> >>transfusion but it looks like that is where I'm heading.

> >>

> >>They are suppose to do some biopsies of granulomas under my skin

> >>

> >hopefully

> >

> >>monday if they come back sarcoid which I'm almost positive they

will,

> >>

> >they

> >

> >>are to start me on Remicade or so that's what I was told. Some of

the

> >>

> >group

> >

> >>has had really good luck with it, and makes them feel better, hey

I'm

> >>

> >for

> >

> >>that. lol

> >>

> >>Thanks,

> >>t

> >>

> >>-- Re: Question

> >>

> >>Theresa

> >>I'm on Cytoxan & I'm not sure what blood levels you

> >>mean. I'm not a nurse but I do have my little slip of

> >>paper that somehow came home with me with a bunch of

> >>numbers on it. If you can give me the initials I can

> >>tell you what my count is but they haven't ever said

> >>anything about a transfusion to me.

> >>Oh yea, can't remember who asked about the Cytoxan

> >>but they've had me on 1400 dose for a while now.

> >>

> >>grannylunatic@

> >>

> >>__________________________________________________

> >>

February 4, 2006

,

Sorry I didn't see your post. I have granuloma's under the skin all over my stomach and chest,

most of them are small knots or lumps under the skin, but some are marble size and these are they

the ones that get sore and painful. They have not been detected on gallium scans, Mri's or CT

so it shall be interesting if she can biopsy these little boogers and see if they are sarc for me.

This will be the tell tell sign for me if I get remicaide or not.

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster under

control till lately. The Hct, and the Hgb are the two that for me are

too

low. This test is to determine if you are loosing blood, somewhere, or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure I

knew

I was really sick. I feel that way now, I hate the thoughts of a blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they will,

they

are to start me on Remicade or so that's what I was told. Some of the

group

has had really good luck with it, and makes them feel better, hey I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 4, 2006

,

Sorry I didn't see your post. I have granuloma's under the skin all over my stomach and chest,

most of them are small knots or lumps under the skin, but some are marble size and these are they

the ones that get sore and painful. They have not been detected on gallium scans, Mri's or CT

so it shall be interesting if she can biopsy these little boogers and see if they are sarc for me.

This will be the tell tell sign for me if I get remicaide or not.

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster under

control till lately. The Hct, and the Hgb are the two that for me are

too

low. This test is to determine if you are loosing blood, somewhere, or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure I

knew

I was really sick. I feel that way now, I hate the thoughts of a blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they will,

they

are to start me on Remicade or so that's what I was told. Some of the

group

has had really good luck with it, and makes them feel better, hey I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 4, 2006

,

Sorry I didn't see your post. I have granuloma's under the skin all over my stomach and chest,

most of them are small knots or lumps under the skin, but some are marble size and these are they

the ones that get sore and painful. They have not been detected on gallium scans, Mri's or CT

so it shall be interesting if she can biopsy these little boogers and see if they are sarc for me.

This will be the tell tell sign for me if I get remicaide or not.

,

What do the granulomas under your skin feel like? I have some areas I

would like to bring to the doctors attention that are kind of lumpy

feeling but I don't know whether I am being paranoid or not. Youn never

know what to tell them or what not to tell them huh? Thanks.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster under

control till lately. The Hct, and the Hgb are the two that for me are

too

low. This test is to determine if you are loosing blood, somewhere, or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure I

knew

I was really sick. I feel that way now, I hate the thoughts of a blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they will,

they

are to start me on Remicade or so that's what I was told. Some of the

group

has had really good luck with it, and makes them feel better, hey I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@...

__________________________________________________

February 7, 2006

Terri,

your welcome, how did your visit go, I am behind in my emails big time.

Marla

Marla,

Thanks for the info; I may bring them up to the pulmonologist tomorrow.

Terri G.

,

Thanks for responding to my question. I'm not taking Cytoxan as of

yet. I

m on Imuran 150mg every day, and it was keeping the sarc monster

under

control till lately. The Hct, and the Hgb are the two that for me

are

too

low. This test is to determine if you are loosing blood, somewhere,

or

if

your anemic. I have pernicious anemia, but and actually, I went to

give

blood one day I was off back work back in 2001, and they turned me

down

because my Hgb was too low. I thought it had to be something wrong

with

their equipment, but sure enough, and this is when my sarc made sure

I

knew

I was really sick. I feel that way now, I hate the thoughts of a

blood

transfusion but it looks like that is where I'm heading.

They are suppose to do some biopsies of granulomas under my skin

hopefully

monday if they come back sarcoid which I'm almost positive they

will,

they

are to start me on Remicade or so that's what I was told. Some of

the

group

has had really good luck with it, and makes them feel better, hey

I'm

for

that. lol

Thanks,

t

-- Re: Question

Theresa

I'm on Cytoxan & I'm not sure what blood levels you

mean. I'm not a nurse but I do have my little slip of

paper that somehow came home with me with a bunch of

numbers on it. If you can give me the initials I can

tell you what my count is but they haven't ever said

anything about a transfusion to me.

Oh yea, can't remember who asked about the Cytoxan

but they've had me on 1400 dose for a while now.

grannylunatic@

__________________________________________________

March 1, 2006

having some strange things going on and wondered if anyone of you have had this too. I'm going off the Neurontin, by 100mgs per dose 300mgs/day, every other week. The nerve pain I went on it for, is not coming back, however I am having headaches, body aches, diarrhea, night sweats but not every night, and every emotional, as I mentioned before, I went of my Effexor months ago. I decided to go to my PCP, and he said it's either hormones, or going off the effoxor, so he put me on welburtrin, even though I'm trying to get off meds. Only now I continue to have all the other symptoms, and insomnia, which makes the other symptoms worse during the day, he told me I could increase my Lorazapam to help sleep, but that doesn't help at night, and I feel more drugged in the am. I want to go off the meds, not add more meds to help me go off the old ones.

Marla,

I still suspect that it has to do with the discontinuance of the Effexor. Whenever we change something to do with our brain chemistry, it messes with the Seratonin, Epinephrine cycles, which have balanced out with the meds we were on--then we dc them, and we end up back at square one.

I just wrote a note to Kim-- I'm using the GERSON THERAPY DIET to try to change my program--and yeah, hopefully to be able to dc some of my meds. Pick up a copy and check it for yourself.

Remember too that if your Seratonin levels aren't where they need to be, that that alone will mess up your hormones--so the diarrhea, hot flashes etc can all stem from the single change--and you've made multiple ones--so it's hard to say which one has caused this problem.

Hugs,

Tracie

March 1, 2006

Marla,

I can't advise you regarding your symptoms, but I wantd to say how sorry

I am you are going through all of this. We spend so much time on med

that when we want to stop them so many freaky things happen. You don't

know if it is disease or not taking the meds. I will pray that these

problems resolve themselves quickly and that you feel better soon.

Terri G.

>

> I haven't posted much lately, having some strange things going on and

> wondered if anyone of you have had this too. I'm going off the

> Neurontin, by 100mgs per dose 300mgs/day, every other week. The nerve

> pain I went on it for, is not coming back, however I am having

> headaches, body aches, diarrhea, night sweats but not every night, and

> every emotional, as I mentioned before, I went of my Effexor months

> ago. I decided to go to my PCP, and he said it's either hormones, or

> going off the effoxor, so he put me on welburtrin, even though I'm

> trying to get off meds. Only now I continue to have all the other

> symptoms, and insomnia, which makes the other symptoms worse during

the

> day, he told me I could increase my Lorazapam to help sleep, but that

> doesn't help at night, and I feel more drugged in the am. I want to go

> off the meds, not add more meds to help me go off the old ones.

> I'm wondering if I should just shut up and put up for awhile and it

will

> get better? One thing I do know is that I need my sleep, I don't sleep

> but just nights now, so can't afford to give up that sleep time.

> So what do you'll think, besides I'm crazy I already know that?

> By the way, you are a funny group, every thought of taking your comedy

> on the road, it could be for Sarcoid awareness????

> Love to all,

> Marla

>

> --

> The Lord bless you and keep you:

> The Lord make his face to shine upon you, and be gracious to you:

> The Lord lift up his countenance upon you and give you peace.

>

> Numbers 6:24-26

>

March 1, 2006